1. Who makes up your support team?
It should become obvious in the early stages of your disease the people around you are unique individuals. Each has strengths and weaknesses. It would be silly for a Hemophiliac to ask someone that faints at the sight of blood to be part of her personal care team; on the other hand, they might make a great chauffeur for someone with a back injury.
If you put together the best team possible, to support you in every eventuality, you must listen to your inner voice and obey it. You must find the people that calm you, that stimulate you, the people that handle the practicalities. You must reach out to the person who can meet a specific need in you. If you choose the right gifts from the people around you, it will produce a balanced and effective team. A balanced team takes care of the whole person – body, mind and spirit.
Your support team will be a combination of many people. You will probably draw it from the following sources:
Spouse or partner, parents, siblings, children, relatives, friends, church members, school, support groups, medical staff, community, workplace, clinics, and volunteer organizations.
a) An ideal team
In my case, I spent many months in hospital (about 80% of the time from 1979-1982). When I wasn’t in the hospital, I was convalescing at home. My family each began to mean something different to me, depending on their strengths. Here is a description of how they broke out.
My husband: Met my practical needs like paying bills, caring for children and home, providing transportation. His strength reassured me. He gave the best hugs. He was my continuity and security.
My mother: Met my spiritual needs. She inspired me to keep striving, brought me great reassurance and comfort through her presence.
My older sister: Gave me hands on care. She would be the one who said, You’d feel better if your hair was washed.” “Let me help you change your nightgown.” “Here is a new lotion to try – let me rub your back.” I never had to ask. She intuited my needs. She is still the one to say, “You’re tired, sit down.” “You’re stressed, how are you going to cope with it?”
My younger sister: Motivated me. She’d show up with a crystal that she guaranteed would improve my healing, or a motivational tape that would get me in the right frame of mind. When I was almost too depressed to keep fighting for life she would fly in and cheer me into rallying. She is positivity personified and makes me believe I can do anything.
My daughter: What healing hands she has. She has only to touch me and I feel immediately calmed. I can feel the warmth from her running through my body. She is my laughter, my sunshine.
My son: Became a source of metal stimulus for me over the years. His accomplishments gave me something to focus on and his philosophy something to learn from.
My brothers: Each supported me in a passive way, a telephone call, a visit. They let me know they cared and were there to be called upon. My younger brother prays for me. My older brother counsels me.
Friends/Neighbors: They divided themselves into all sorts of wonderful givers: The bakers, the babysitters, the foot rubbers, the readers, the distractors, the chauffeurs, the comforters and the entertainers. They were and are invaluable.
Bosses: At the time, both bosses were Anglican ministers. The first offered me prayer and an opportunity to build self-esteem again. The second offered prayer and energized me more than anyone else in my life.
God: By the third year of my disease I came to realize that my greatest support came to me from my creator, and the belief my body was designed to heal itself, if I kept body, mind, spirit in sync. As you can see I was, and am, truly blessed by the people around me. Those people were there because of my lifetime investment in them. They are your most valuable resource. It is never too late to start to collect people who enhance your life. You need these people on your team.
2. What are my support needs?
a) Help not Intrusion
Chronic disease is about inconsistency. One day you are going great guns, the next you can barely move. In my case with both fibromyalgia and Crohns and hormone changes I can become really unfocused mentally. My short term memory takes a nose dive. I’m distracted, my speech jumbled, my handwriting illegible. When I catch myself in this space, I need to ask for help. This happened several times when I was writing Smart Women with Barbara Thrasher. So I’d say to her, “I need you to edit everything I write today because my mind is in meltdown.” I knew I was covered and could relax and complete the job. She knew what she could do to help.
“Asking honestly is modeling good behavior.” Maxine
There are many times when you don’t want help. This is typical of a Type A person.
Lily: I don’t want somebody doing something for me, or assuming I couldn’t handle the job.I have to feel like I’m in control of me and I have to be independent.
I happened to be at a potluck dinner with Lily. I went into the kitchen to help with dishes and she followed me in a picked up a dishcloth. Her fingers were twisted backwards with rheumatoid arthritis, her hips, feet all have been distorted. “Are you okay to do this?” I asked her. “Sure thing. I like to help,” she said. We continued to work together and visit. At intervals, three other women came into the room. I watched while each one went to great lengths to persuade her she wasn’t capable of helping with the dishes. One even tried to wrestle the cloth out of her hands. These women truly thought they were being helpful – they were caring, kind people. They did not realize how demeaning it was for Lily to be treated like a child who didn’t know what was best for her.
In order to prevent this from happening again, Lily needs to establish in this closed community her ground rules. She needs to say, “I will ask you when I need help, otherwise please don’t assume I do.”
During the times when my brain is working well, I don’t need help and would resent somebody taking over my work. This allowed me to understand where this woman was coming from. But how are those around you supposed to know when to do the work, when to offer to do the work, when to back off, unless they can rely on you to ask for help when you need it? The first time anyone offers to help you put your ground rules out for him or her. Now you both can get on with your lives. Sometimes people don’t understand that when you say, “No thank you.” to something they suggest, you’re not just being stubborn. You have carefully weighed the amount of stress against the amount of gain. With the best of intentions, they might be stomping all over your comfort zone. You are dealing with problems they can’t know, unless you help them to understand.
If people do not seem to hear you when you set out your ground rules, and continue to attempt to support you according to their agenda, they are not the right people to be on your team. Faze them out wherever possible and replace with people who are willing to play by your rules.
Ray: My spouse gets upset when she sees me taking the nitro. I went for a walk with her the other night and sprayed my nitro before starting. Her eyes got big and she looked worried. To her it’s a show of concern, but her fear puts more stress on me and leads toward more angina.
Henry: When I start losing weight my wife worries a lot. She asks me about it and urges me to eat or see the doctor. It’s not quite invasive, but it is not helpful. When I know she is worrying, I worry and that causes me more stress.
Carrie: I have a friend who wants to take me for outings. If I don’t know what is there in the way of ramps, washrooms etc. it is so overwhelming that I wished I stayed at home. “Where is the washroom?” becomes so important that the anxiety takes away from the enjoyment of what you are doing.
b) Potential for conflict
Supporters too, particularly if they are very close to you, may feel that people are intruding rather than helping. You may be caught in a situation, where one person on your team is in conflict with another who wants to help. You may have to point out that this is an extremely trying time for the Supporter as well as you. His/her perspective might be skewed by all sorts of inner conflicts and emotional baggage. If you wish to have both persons on your team, you need to let each of them know they are needed by you, and ask each supporter not to rebuff the help offered by another.
- Sometimes there is dissent
There is an old movie cliché of all the relatives gathering at the bed of a sick person because they want to be included in the will. Most often, what is happening if you find yourself drowning in loved ones is that they have been shocked into the awareness of losing you and are trying to show they love you. A show of love is a great antidote. What is poison is the family competitions that can spring up around you. You might find yourself like the wishbone of a chicken, pulled between two people who are both insisting on cooking your dinner, tidying your bed, looking after your children, bringing your work home for you. They see it as an expression of caring. Underneath is a desire not to be outdone in the “love” department by someone else. It adds stress to every situation. Have them stop it immediately.
- Sometimes there is harmony
Ken: I never felt my wife’s parents were intrusive in helping her and providing health care support. We have a good relationship. Each of us does what we can to make her life easier.
Take a firm stand in organizing your team and delegating tasks. Remind them that the common goal is making your recovery as smooth and stress free as possible. You will create an environment of cooperation and harmony.Often the diagnosis of a disease is something that brings people together with a common goal and creates harmony where there was little in the past. Take advantage.
c) Family members
Family members are our first line of defense against the feeling of vulnerability and powerlessness we often feel because of our disease. As we lose our independence, in certain areas, whether short term or long, family members pick up the slack. If your arm is weak someone becomes your hand, if your eyes are dim someone leads the way.
“I think that knowing what is needed is more
of a family issue than a personal issue.” Megan
What family members are on your team? What gifts do they bring?
- The ideal spouse/partner
Sylvia: My husband listens to me and helps me come up with solutions. He puts time and thought into it. He says, “I think we should come up with an extra $100.00 a month so you can take that new drug, because it’s on sale now.” He doesn’t push me to try everything out there, but if he knows I’m interested in something he says, “If you want to do it let’s find a way for you to do it.” There are times, when at my request, he will call a doctor and discuss things with him because often a doctor doesn’t treat a woman the same way. If I ask him to do something or handle it for me, I know he will do it diplomatically, decently and with class. If I have been able to make the meal, we never leave the table without him giving me a compliment. He believes in me. If I tell him I’m in pain or I can’t do something, he believes me. Sometimes the doctors have made me cry and he listens and consoles me, but he doesn’t pick up the phone and come down like a hothead. It would be stressful for me to endanger the relationship with my doctor. If he needs to take off time to get me to the doctor or appointments, he says, “Work is not as important as you.”Henry: Good support is coming home totally exhausted and being able to rest and not do anything and have your supper made for you. Normally, I’m the first one home and I look after the dog and cook supper, but it’s a tremendous relief when she handles it and I can sit down in an easy chair, and know I don’t have to make any further effort this time.
In my case, my husband saved my life. You can’t get more ideal than that. He received an emergency call saying I was hemorrhaging badly. He left work, flew a corporate plane to the rural grass strip near our summer cabin, and flew me back to the city, where an ambulance raced me to the hospital just as I went into shock from loss of blood. A chronic health condition puts huge stress on a relationship. If you are fortunate enough to have your mate hang in there with you consider yourself truly blessed. Your spouse is in the twenty-five percentile range of those that vowed, “For better or worse,” and meant it.
- Sharing the chores
As you adjust to your chronic condition and arrange your life around it, so does your spouse or partner. Together, the men and women I interviewed have come up with workable solutions for the everyday chores that must be done. Here are some of the ways they share the work.
Ken and Carrie: We do the dinner dishes together all the time. I’m not there for lunch and breakfast dishes are minimal. Every Sunday is dust and vacuum day. She’ll dust and I’ll vacuum. She gets the laundry into the machine and then asks me to fold it and put it away. I’ll do all the yard work. She likes to work on the flowers. She’ll go out in the front yard and sit down in front of a bed and do some weeding, but anything else is too much work for her. I do all the daily things like picking up the mail, paying the bills, banking, groceries. I don’t like doing the groceries. Carrie makes out the list and plans the meals.
Sylvia and Andy: My first husband would have criticized me if I hadn’t dusted in two weeks. Andy understands and lives with it or does it himself. If I say, “Making supper took me an hour and I have to sit down,” he just does the dishes without comment. Or sometimes I can’t do anything and I will jot down a list and say, “These are the things I would like to have done.”
Martha and Henry: I take on more responsibilities around the house when Henry gets tired. Generally he does the majority of the chores. I took on more of the childcare for several years. I take the financial pressures off of him because I’m the accountant of the family. It makes me feel good to be able to remove that stressful part of our life.
- Putting time back into the relationship
As well, there were many other things that caused friction, disappointment, withdrawal, confusion and frustration for both of us. Do any of these sound familiar to you?
“I didn’t get the attention and love I felt I deserved.” Adam
- As time passes and your spouse becomes more exhausted and stressed from her/his job, the childcare, worrying about you, and his other responsibilities, s/he too may become totally focused on self and what he is missing.
So with a 75% chance of your relationship crumbling under the stress of a chronic condition, it is important that you invest time, money, energy and love in this most important relationship. During my long bout with Crohns I was focused on my next tough decision and much of the time, survival. My husband, who was doing so much for me, was on the list somewhere below: me, the two children I felt guilty about, my mother and sisters who provided comfort, my community who I had let down, my boss who I was letting down and our two Siamese cats who had to be fed no matter how sick you were.
- My lack of ability to be spontaneous around outings and travel.
- The decrease in our social life as a couple.
- The deterioration of our sex life because of my hang-ups and pain.
- Control issues about almost everything.
- Money pressures caused by the cost of my health care needs.
- Exhaustion for both of us from carrying too much of a load.
- Depression for both of us that it was a never ending situation.
- Emotional damage caused by my reactive tirades against what was happening to me.
- His increasing emotional withdrawal that left me feeling abandoned.
- Loss of freedom for the care giving spouse.
You can see why communication between us was of prime importance and is even more important today. I don’t know how he did it, but Den supported me in every way for the seven years it took for me to get back a partial life and for the years since when I have had many new challenges to deal with. It is a testament to his strength, commitment and compassion that we are still together.
Matthew: I tried to share with my wife, initially. I became self-absorbed and introverted. I don’t know why, and I think that was what led to the breakdown of our marriage. I sort of closed-off from everybody. It was after my transplant. I am positive now that it was partly the result of some of the drugs I was on, because depression is a side effect of quite a few of them. I knew it was hurting my relationship, but I just couldn’t express what was going on. The best I can describe it is being in thick, syrupy water … everything moving in slow motion. Even now it is hard to share this. I wouldn’t call it living. It was more existing at the time. I was sleeping 16-20 hours a day, but it wasn’t restful.
What forms of communication will help you and your spouse or partner empower each other?
- Schedule time away from the rest of the family to be together. It doesn’t have to be a exotic, expensive trip, but a weekend at the cabin where you focus on each other.
- While in the hospital you can write notes or phone to leave little messages s/he’ll get later, to show your spouse you are thinking of him/her with love.
- Visits from your spouse are wonderful, make sure the conversation is two way and about both of you.
- Share your fears around intimacy with your spouse, what will hurt, what you would still enjoy, how you feel about your body. Ask him/her to share how s/he feels about intimacy with the changed you.
- Talk about the emotional backlash of the disease on both of you – allow each other to vent without taking it personally.
- If one or you is experiencing long term emotion such as anger or depression, you may need to seek the counsel of someone who can get you both sharing and searching for solutions together.
- Schedule a date night at home that is inviolate from other engagements.
- Share reading material that expresses well how you are feeling, or what is going on in your life with your spouse or partner – ask them to read it so they can understand better.
- Both partners might keep a journal of what is happening between you during both good and bad times and agree to read to each other’s for better insight.
e) Add friends
When Phillipa was diagnosed she went about dealing with her disease, work and family, but became steadily more aware that something was missing. Simultaneously, she began to push for a new home in a new location. Later, she could identify that this home was not about material gain but about getting an important need met. She did not feel supported by the neighbors where they were living at that time. She had only superficial friendships there, and she realized she needed much more to support her once she was diagnosed. Moving created a fresh new start for her. Friends are invaluable and we find them in the least likely places and in the strangest ways. You can never have too many, so keep yourself open to recognizing the people who can become your friends and part of your support team.
Sylvia: I remember relying so much on my friend. We worked so well as a team. If I was floundering I could count on her to dive in and pick up on it. So that was a great stress reliever, having her around, and believing in her ability to read me in situations. I also have a couple who are the same age as my parents. She is great back-up. She’ll keep a daily check-in with me when I’m going through a bad spell. She always does or says something to brighten my day, like, “Hi sunshine, how goes it?” She keeps me in touch with the world and reports back to other friends about my progress. She is well informed and so we can talk medications together.
Matthew: I get support from a group of guys. They catch me at a weak moment and I will share with them. It helps me to know that they are there for support if I really need them. My one friend hates hospitals so I was really impressed when he visited me in one. We don’t initiate serious subjects, but sometimes they pop up in the middle of conversations. I spend time with them to escape from bad thoughts and depression.
Good friends understand that sometimes support means just showing up so you can vent. Naomi told me that Sylvia doesn’t want her council or advice. She just wants to be able to say whatever she really feels without being judged.
One of my friends was a retired Registered Nurse. She agreed to give me my monthly Vitamin B injection so I wouldn’t have to do it myself. I had tried, but it made me so tense it added to my stress. I could go to the hospital for it, but that was a waste of time and also stressful. A quick jab and a cup of coffee with a friend seemed like the nicest way to go.
f) Add community
If you do communicate your health problems to a person at work and don’t want it to become common knowledge, be sure to say up front that this information is confidential. You may fear pity or a harsh judgement from a fellow worker, so it is your right to protect yourself and maintain your privacy. However, I have strong feelings about withholding this information from a prospective employer. No it’s not mandatory for you to share your health problems. But it is fair. This person should have a clear picture of what you are bringing to the position before he or she makes the decision to hire you. People I interviewed who included this information in a job interview still got the job. Maybe hiring an honest person was more compelling than the possibility of you asking to take some time off in the future.
If you are already established in a job, there will be several reasons you may want to communicate to your employer and fellow workers that you have an invisible disease. You may want to make a claim on your insurance. You may need extra time to finish a project, or for someone to help you with your work for a short period. You might have to set up a schedule at work that includes a weekly appointment for treatment, or take time off to undergo tests or surgery.
If you are a young person still in school, or if you are in university or taking continuing education, personnel in the school should be informed of your condition and what will result. Your parents may need to ask for special monitoring for you, or you may need to let your professor know you will be having further surgery and will miss class. If the school personnel are informed of your special needs, things like bathroom privileges, breaks for insulin shots, seating changes, and diet considerations can all be taken into account and dealt with. The teachers and heads of your school generally display an empathetic, common sense approach to problem solving. Parents might wish to request special counseling for you, if you and your team thinks it be of benefit. Definitely, the school counselors should be informed of the situation.
- Public disclosure
If maintaining privacy around your health is an issue to you, this is a big concern. I remember receiving a letter in 1991 requesting me to be tested for AIDS, because all of the transfusions given me between 1979 and 1986 (and there were many of them) weren’t screened for this disease. I was horrified. I didn’t want anyone to know I had to be tested for AIDS. Even filling in the form my doctor gave me, with a code name, meant that several people on staff already knew who I was. The idea that my privacy was so threatened was of bigger concern to me than the disease. Of course, being a blunter, there was no way I had AIDS. And thank God, I didn’t.
- Your need for privacy
You’ve all watched enough TV shows to know there is a way for anyone to get information on you. With everything on computer these days we feel especially vulnerable. If you have disclosed to your employer that you have a chronic disease that information is probably on your file, and may in time be seen by a processor, receptionist, or secretary. Any one of these people might overlook your right to privacy and share your condition with others. Let’s be realistic. It happens and lives have been ruined this way. The bottom line is you have to weigh your need for protection within your community and workplace with your need for honesty and support.
3. How do your communicate with your team?
a) Choosing not to communicate
Shelley: I don’t pass on info, because I still don’t admit to having SAD. I see having SAD as a weakness and blame myself for it, even though the medical people say that’s not so. But I’m not going to tell others I have a weakness or that I’m weak. I don’t want them to treat me differently or perceive me in a new way. I don’t want them to think I can’t handle the responsibility of that job. I need to handle the responsibility to feel good about myself.
Shelley is not alone in choosing not to tell others about her disease. The disease or your reaction to it may create a huge barrier that you struggle for years to break through. It is an instinctive first reaction. I remember after my ostomy surgery I felt desperately alone. My body had been altered forever. None of my family or friends could begin to imagine the changes in my life – physically, mentally and spiritually. I wanted to share so they would understand. But the changes were based on the physical damage and I couldn’t bear to put those images in their heads in case they found me repugnant and rejected me. All sorts of fears keep us from communicating about our disease.
When you choose to keep your chronic condition from others, it sets you firmly in that grey zone created by an invisible disease. Because her co-workers and friends don’t realize she is sick, Shelley will always be working against herself, trying to perform at a level they expect and of which she is incapable at the moment. She will push herself harder to appear normal, and in doing so cause herself greater stress and exhaustion, depleting her immune system further. She will feel cut-off, frustrated and helpless.
Matthew: I remember my diabetes caused me to always be centered out. I had to have an afternoon snack and morning snack in school to keep my sugar levels even. Instead of letting me eat it quietly at my desk, my teacher made me get up and go to the washroom, so everybody knew. I remember it really irritating me that everyone’s attention was being brought to how I was different. As an adult I keep my disease invisible so I don’t stand out from the crowd, unless I want to. We all want to consider ourselves part of the group.
Robert: When I was walking with someone, pushing too hard I would step back and take my Nitro so they couldn’t see. It embarrassed me to know I had to take the Nitro. It made me not normal.
Gail: I have close friends but I don’t know if it’s my own attitude or they’re just the type of friends that don’t like hearing about this type of thing. They quickly change the subject, saying something inane like, “Well that’s too bad.” It makes me feel like I’m whining or feeling sorry for myself. It’s hurtful. It doesn’t seem important to them. So now I don’t bring the subject up. I always put a good face on when I’m with other people.
By not telling his friends he has diabetes, Matthew continues to expose himself to the temptation of food, drink and activities he knows will harm him.
By hiding his condition from his walking pal, Robert is not accepting his situation. In order to adjust, he needs to change his attitude. The good news is that Robert did learn to say, “Slow down, you’re walking too fast for me.”
And Gail is second-guessing her friends, letting her own feelings of inadequacy speak for them. In time, she must learn to ask, “Does it bother you if I talk about my disease? Why? She might not like their answer, but at least the next time she feels so badly she needs to share, she’ll talk to someone who cares.
b) Choosing to communicate
And you definitely will need to share. Talking about your disease is part of the process of accepting your disease and then adjusting to it. If you share the challenges you face with your friends they will become collaborators rather than undermine you unintentionally.
Shelley: I told one co-worker who I spent a lot of time with when we travel. It was when I was really battling SAD and went on medication. She is very supportive and can read my moods. She can recognize attitude changes in me, or changes in the way I deal with a client. I won’t be as interested, in depth or passionate when the SAD is high. I’m more negative and she will be able to pinpoint that and know I’m not so good that day. I needed somebody to talk with about it.
Sometimes needing to talk is not rational. It’s not about communicating for understanding but just getting rid of some angst. So, if you know you are going to have to spill the beans or erupt, it is probably a good idea to choose wisely with whom you share.Confidants are a special and rare breed of people. We might have the closest friends possible, but an honest assessment will allow for their need to gossip, share a confidence with, “Just my husband.” or be so insensitive they don’t realize it is a confidence.
My husband was the best when it came to keeping my secrets. I can remember my rector arriving at my door, after a game of golf with my husband. It turns out the game was partly to minister to Den if he needed to talk, and partly to find out the true story about me. The rector informed me, his amazement quite apparent, that Den had told him if he wanted to know about me, he should ask me. And he did. Now there is good communication. My dear husband didn’t beat about the bush in protecting my interests, and I was able to divulge only what I wanted to share with my rector.You might be hurt or upset several times in the early stages of your disease by people giving out information you prefer to keep to yourself. You might hear a nurse discussing your condition with a visitor, a breach of etiquette indeed, but not uncommon. You might have a sibling inform your parents when you would have preferred to tell them yourself. Or a kindly intentioned person might discuss how sick mommy is with your child. You learn to choose with whom you share information. Possible sources of a good listening post or counselor are: your GP, your rector, a psychologist, a family counselor, members of a support group, a trusted friend or family member.
4. How do you ask for help?
a) Breaking through the barriers
In the beginning, it was impossible for me to ask for help. If someone did do something for me I felt obligated and would do something back that always had to be bigger and better than what was done for me. It was a terrible way to be and must have hurt many people who had given just because they were good people. After about my third hospital stay when I was too sick to give to anybody, and people continued to give to me I started seeing things differently. I realized that the gift I could give back was my heartfelt appreciation for what they had done, a kind word, a compliment, something to make them feel good. I recognized receiving with an open heart was the greatest gift I could give them. I observed it gave them pleasure doing for my family and me. I learned not to measure in dollars but in words, thoughts and deeds. So, instead of buying them something to thank them for doing something for me, I would send them a note that said how much joy they had given me. I’ve written a lot of notes in my life.
“It is really difficult for me to ask for help – about 8 on a scale of 1-10.” Shelley
I got better at asking for help – for things I needed when I was bedridden. When people asked if they could visit me and “What could they bring?” I would tell them what would really make me feel good instead of leaving them to guess. I wouldn’t play games of pretending something was the greatest if it was impossible for me to do. For example if a friend brought me a basket of oranges and I couldn’t eat them, I wouldn’t rave about the oranges. I would say how much I appreciated the thought and tell her I couldn’t eat them, but my children would really enjoy them. Then she didn’t show up with more oranges (that she knew ‘I just loved’) the next visit, perpetuating the lie between us.
When I was too weak to hold a book, I suggested to my neighbor who had expressed a desire to help me that reading to me would be a real treat. She came every third day and read for a couple of hours. It was special time. I am positive it made her feel as good as it did me.
At first I would lie for days feeling miserable because my legs scratched each other or my skin was so dry it itched before I’d ask for help with my grooming. I didn’t think a supporter would want to do something that personal and if I asked they would feel trapped, because they were too nice to say no. Then as my philosophy changed I asked my daughter or sister to put lotion on my feet or shave my legs. They were pleased to be told a specific thing they could do to make me feel better, and by showing them how much I appreciated it, how much comfort it brought I made them feel good too.
So, we have established that it is important for you to ask for help. This does not turn you into a whiney, complainer. Instead, it gains you the respect, admiration and cooperation of those around you. There are some constructive ways to do this.
“Don’t be the little boy who cried wolf. Keep your complaints to a minimum so that when you really are in trouble your team takes you seriously.” Sylvia
b) Call a family meeting
Put everybody in the picture. People can’t help if they don’t know what is wrong, what is different, what you need and what they can do. Gather your extended family together, if possible and set out the terms of your illness in a matter of fact way that provides information without creating drama. This is not the time to go into the gory details, particularly if there are children present. You can offer good sources of information or make yourself available to share what you are comfortable to share later one-on-one.
Now is the time to explain what will be different in your life. “I have MS, my legs are really weak, I will no longer be able to play tennis with you, look after my niece, help you move.” “I have diabetes I can’t drive myself anymore, so I can’t take a turn with the car pool.” “I have congestive heart disease I can’t work as a firefighter anymore.”
Go on to tell them what your needs are. For example, you might tell them not to phone during the morning when your Home care nurse will be with you, or that a hospital visit longer than fifteen minutes is too tiring for you, or that you need a driver to take you to appointments.
When the offers for help start rolling in, communicate clearly, who you want to do that particular service. You don’t want your mother to help you get dressed if she’s always critical about how you look or your aunt to drive you if she’s wild behind the wheel. At the forefront of your mind must be keeping your day as stress free as possible. Make your choices wisely.
A shorter, more intimate family meeting should be called to deal with unexpected or imminent circumstances. For instance, you can get your husband and children together to explain you are going to have to be driven to a specialist in another city. You might want to discuss the fact that Grandma’s birthday is coming up and you don’t feel well enough to attend, how can we [as a family] handle this?”
c) Practice preventative maintenance
Here is where you tell your loved ones just what they do to push your buttons. It isn’t pretty. But if you ignore the problem and it continues you are making a choice to continue to harm yourself
- Carrie felt badly when she had to tell her 12 year old son he couldn’t have friends over after school. They were too noisy to allow her to rest when she was ill.
- I remember asking my son not to come home at 10:30 p.m. and share the injustices of his Air Cadet squadron with me. I became too emotional and upset and then couldn’t sleep. I asked him if things were bad at Air Cadets if he could tell me about them the next morning.
- Shelley won’t let her mother give her practical help because it puts her on the defensive. “I think my mom is saying I can’t handle it on my own,” she says. It causes me stress.
d) Other ways you can maintain your health
Share with your support team the things that serve as stressors in your life. If they know you hate crowds, they’ll understand when you refuse to go to the Super bowl. If they know you tire easily when shopping, they’ll agree to tea a lot sooner. Explain to your team when you have the most energy and least. Tell them your likes and dislikes, what feels good and what doesn’t, what helps and what hurts more.
Robert: I love hockey games but crowds and noise stress me and trigger my angina, so I ask my companions if we can wait until most of the stadium is cleared out before we leave.
- Suggest things you need like massage, lotions, manicures, pedicures, haircare, physiotherapy, counseling, reflexology, alternative your health you can’t afford them. Often family and friends are frustrated by wanting to give you something that will help, but not knowing what will. Your honesty is a big relief for them.
- Don’t hesitate to tell your doctor, specialist, or any caregiver about your symptoms, concerns or changes in lifestyle. Ask your physician what you are able to do physically and what you shouldn’t attempt at this stage.
- Learn to recognize the triggers for certain symptoms – share them with your team and have everyone help you to avoid them.
- If a medication is prescribed but you are not sure how to use it, ask your doctor or your pharmacist. Ask until you have a clear picture of what to do, how many times
Robert: When I first got my nitroglycerine spray I was afraid to take it because they didn’t explain how. I would go for a walk and have to stop and rest every 15 minutes to bring my heart rate down. I did that for over a year before I asked the doctor. He said, “that’s not using nitro right, take it ahead of time.” I asked if I could become addicted and he assured me I couldn’t.
e) Problem solve with your team
You love camping. As a family, you have camped together for years. You still want to camp, but now you have health considerations to take under advisement. Just, as you all worked together to set up your campsite, so you can come up with practical ways with which to overcome your limitations. Don’t deny yourself pleasure, and your family your company just because you think the changes your health will necessitate will spoil everybody’s fun. Leaving a loved one behind usually takes a lot of the fun out of an occasion. You will be amazed at what can be thought up when a team puts head together and searches for new solutions. Each person brings a unique perspective to the table.
I found when I had a problem I used to go over and over it trying to get an answer, but I had tunnel vision and only saw one answer I didn’t particularly like. When I asked my husband how he saw a particular thing going down or an activity being organized he had his own slant and often it was more effective than mine.
You might need to come up with a way to afford a new drug on the market, a way to get to the bathroom when everyone is out of the house. You might want to cook dinner from a sitting position and your teenager rigs up a chair on his skateboard so you can slide around the kitchen. Who knows! You won’t unless you start seeing the people around you as valuable resources.
5. What happens when you don’t ask for help?
a)Feeling a burden
Everybody suffers. Many times I didn’t ask for help just because I felt like I was a burden. This feeling is often compounded by the fact, not only are you needing extra attention, you are not doing what you used to do for the people you are asking for help.
It is also cumulative, so that the longer you are out of action and need help, the more you begin to see yourself as a burden and the less you ask for help. I did silly things like letting my husband leave a room without asking him to stop and adjust my pillows or bring me the book I left in the other room, or turn down the TV. I could be uncomfortable for hours all for not opening my mouth that second.
I didn’t ask my son who was perfectly capable, and wouldn’t have minded for a minute, to get his own dinner. Instead I would lean on the kitchen sink feeling like my entire insides were about to drop onto the floor and peel the potatoes, because I was worried that he might think I was a pretty useless mom if I couldn’t even get dinner.
b) Being stubborn
When I received my back injury and the pain exasperated my Crohns, I desperately needed someone to drive me to physiotherapy every second day. The pain was so terrible that just getting in and out of the car was a trial. I didn’t consider asking my husband to take off time from work. He was carrying a huge burden already. But I could have asked a neighbor, someone in my church or phoned a service. Instead, I drove myself across the city while ripping strips off myself internally for not giving in. I’m sure I did myself harm a lot of times, or at least didn’t do anything to hurry the healing by my stubbornness. Today I look back on all the lost opportunities, to spend more time with another person in a meaningful way, if only I’d asked. And for the lost opportunity of a neighbor or friend in not being able to understand and offer a service that would have been greatly appreciated. The up side is that the more of us who go through these experience of feeling helpless during an illness, the more we can empathize and meet the needs of others when they go through it.
Ask for hugs. Ask to be held, to be stroked or to have your hand held during a tough test or invasive procedure. Ask for touches. They are one of the most healing things a person can give you.
Often when you go through extreme illness you withdraw and send out messages that you don’t want to be touched. A little voice inside of you is saying, “I’m too ugly or icky, too guilty or careless to deserve to be loved.” “I did this to myself and it’s causing everybody else to suffer, so I should be punished.” You paste this mind-set onto all the people who love you and are trying to reach out, until finally they back-off because it’s the only thing they haven’t tried. When you start missing the outward gestures of love you and may read this as judgements against you, yet you brought the lack of attention on yourself. Be careful that you share from the first your need to know you are loved, valued and to feel that in the touch of those around you.
d) Refusal to take responsibility
Take ownership. For years if I had a decision to make I surveyed everyone I knew, even the mail deliver might be polled. Of course, you get as many answers as you asked people and end up back where you started, still wondering what to do. One of the things all my surgeries did for me was to help me to understand that no matter how many people are there to help you, no matter how many opinions you ask for that the final decision has to be made by you alone. Often it was a decision that made the difference between life, or death for me. You learn how strong you are when you make a tough decision, face the consequences and take responsibility for the final results. In some cases, all the communication in the world is nonessential.
Matthew: Both my younger brother and sister volunteered to be tested for kidney donors. I was glad they volunteered because it would have been way harder to ask. But I would have asked if it meant staying alive. My sister was pregnant and so was eliminated. My younger brother didn’t ask if I wanted him to do it. He just went for the blood tests. He was a match. I’m sure after the surgery he wished he hadn’t volunteered. It’s much harder on the donor than the recipient. I feel much closer to him for what he gave me. I can’t put my feelings for him into words. It has changed the way I think of him forever. I don’t know how you go about returning that type of giving.
6. What type of medical support do you want?
Your medical support team includes your GP, specialists, nurses, doctors, technicians, your doctors’ receptionists, the home care nurses, home care providers, physiotherapist, massage therapist, psychologist, nutritionist, and pharmacist. Putting together the right team is paramount to your well-being. If your relationship with someone on your team is stressful, you must replace him with someone who ensures in you calm and a sense of trust.
a) Your safety net
I was in the hospital so long, so many times, it became my home. I was afraid to leave the hospital and to leave my nurses and doctors who had become my family. I depended on them and trusted them more than my real family for quite some time during the three years of crisis. When I was told I could go home I was terribly afraid. It was so beyond my comfort zone to go back out into the world after the safety of that private room. It is not surprising that you do not want to be parted from the team members who have taken care of you when you are most ill and vulnerable. A bond begins to stretch between you with the first sponge bath or medical report, and it strengthens with each IV, each syringe, each pill, each set-back and each Code Blue. They may not act like you want, do what you want, say what you would like to hear many times. They may not have the answers, but you are fairly certain if they don’t, no one does. They become the safety net under the swinging trapeze.
b) No harm no foul
The other side of this euphoric picture is the tremendous frustration of dealing with a medical team. Your only protection is information. Arm yourself with your medical records, your experience and every piece of knowledge you can pick up. Most chronic disease patients are classified as high maintenance. This is because we refuse to be treated like a faceless room number or as a disease rather than a person. We go from accepting everything without question, to asking nicely for what we know is right for us, to demanding that we be taken as a serious member of our own medical team. Time has taught us the intricacies of our bodies and their response to drugs, treatments, tests, environments and conditions. We have paid too often with pain, extra times in hospital, crisis and near death experiences because we were not treated as a unique person rather than another medical history. Because of the criteria I used to choose the case studies for this book, each of the people interviewed have lived more than ten years with chronic disease. Most of us are two-decade plus veterans. We are savvy, slightly cynical people. We are convinced that we are the best monitors of our physical, mental and emotional wellbeing. As Matthew put it, “I don’t come from the view that my parents did, that everything the doctors say is Gospel.”
c) Communicate with your medical support
Sylvia: I have trouble dealing with the doctors on the ward when you go in on an emergency basis. They describe dosages that I know won’t work for me. They don’t listen well, refusing to believe you know the best treatment for yourself. They want to follow the book.
d) Being Heard
This happens again, if experience has taught you, you need certain treatments at specific times or you will pay. For example after one surgery I had a catheter inserted. This was not new to me, and I had already had a bad urinary infection by not having the catheter removed in time. This time I wanted to avoid the pain and fever that resulted. When I felt the first of symptoms, I asked the nurse to remove the catheter. Of course, she couldn’t do it without the doctor’s orders. The doctor was off because we were heading into a weekend. The resident refused to take responsibility or call the doctor. I was left with the catheter two more days. When my surgeon did his rounds Sunday evening he found me with a raging fever, incoherent and in terrible pain from – yes, you guessed it, a urinary infection that had become systemic. I am so wise to the ways of the world now, that if this occurred again, I would request my doctor to write orders for my catheter to be removed at my request.
- You may experience medical staff that is rude, abusive or demeaning. If you ask to be treated by another doctor or assigned to another nurse you are often labeled high maintenance and treated like prima donnas out of control.
- You might feel you are not being heard in many ways. One of the biggest frustrations is when your GP ignores your symptoms. The invisible diseases are difficult to diagnose and they have many overlapping symptoms. Your GP may not take your aches and pains seriously, and by ignoring what you are telling him or her cause your disease to worsen because you didn’t get help for it in a timely manner.
- I was never so grateful in my life as when my surgeon, Dr. Fred Inglis, made the decision that I knew what I was talking about when it came to treating my disease. When he included me as a member of my medical team I knew I was being listened to, and that I had some power over what was done to my body.
First time patients seldom have the hutzpah to stand up to a doctor, and so they learn this lesson over time and with many experiences of regret that they didn’t speak up. In my case, the first few times I wasn’t listened to, I was proven right. For example, I insisted that I was extremely drug sensitive and that I couldn’t tolerate the same dosage of medicine as was normally prescribed for a patient my size. I was ignored and given the average dosage, and several times suffered an overdose. Once my team was listening it didn’t happen again.
e) Recognize your limitations
Be aware that you may not be a good communicator while you are ill. You might have short term memory loss and not be able to recall the information you need. Long-term pain, drugs or stress may cause this. For the same reasons, it might be difficult for you to organize information and state it clearly. You might be sending out confusing signals to your medical team. “Yes, I’m fine,” you say, when asked, trying to be a good doobie, and project a positive image. But inside you’re screaming, “I’m horrible, I’m in such pain, I’m nauseated, I’m scared.” They can’t help you, whether it is your home care nurse or your surgeon, if you don’t speak up. Take your time. Possibly write what you want to say down ahead of time. Be gentle with yourself, if you’re not as lucid or concise as you are used to being. Go back to Chapter 2 Diagnosis and re-read some of the suggestions for communicating with your healthcare workers.
- What is relevant?
Matthew: I don’t have any trouble discussing things with my doctors. I think that is because I have educated myself. I also offer my own opinions and views, so I get more information from them in answer.
Consider what is relevant to your doctor. Does she really need to know that Great Aunt Bessie fell off a wagon and broke her leg when she was three? On the other hand would it be helpful for her to know that Great Aunt Bessie died from what they would now diagnose as colitis? Of course. If your medical team becomes accustomed to you rambling on about insignificant details, you can bet they will start to tune you out. They’re busy professionals and time is the enemy – to their schedule, to getting you treatment. Use yours wisely to ask relevant questions and pass on relevant information like changes in symptoms, new symptoms, changes in schedule or treatment that have resulted in changes to health.
- Are you holding back?
Maxine: Recently I was scheduled for a cat scan. I arrived at the test centre and the technologist began telling me the procedure. When she said that a possible third stage might be the injection of a dye into my system, I asked her if it was iodine based, she replied “Yes.” I pointed out that I went into anaphylactic shock when injected with iodine, so they needed to be aware of that. I did this because twice I had had iodine based die pumped into me for a test and experienced an immediate swelling of the body and intense pain. It even frightened the doctors monitoring the test. The technologist took exception to my desire to protect myself and got huffy. When I began to discuss how we could work around this she just ripped my papers in half and said, “We won’t be doing it.” That left me with an cat scan that did not conclusively prove what it needed to, because she brought her mood to the table.
Even when you’ve learned the hard way that if you don’t speak up you might pay for a medical worker’s mistake, you may hesitate to protect yourself because you fear his or her reaction, if you speak up.
Be honest with yourself. Are you leaving out important information because you fear your doctor’s anger or don’t want to hear a lecture. For instance, are you a heart patient who has started smoking again? Are you a Crohns patient who is still drinking alcohol? If you leave your team in ignorance they will not be able to help you, in fact they could do you some harm, like prescribing a drug you can’t take with alcohol, and assuming its safe because you’ve told them you don’t drink it anymore.
7. What can a support group do for you?
a) The process
Many of those I interviewed told me that there is a right time to join a group. There is a process of learning about the disease, adjusting to it and then becoming ready to reach out for more answers and validation. Joining a group does not lock you into a lifelong situation. You may not benefit from a group; though most people find that there is at least some short-term gain. The big thing to remember is that you will know if, and when, you are ready to try one out. If people are pressuring you to join a group before you are ready, explain to them that adjusting to your disease is a journey of many steps, and you are still working on the first miles of your trip and see ‘joining a group’ as a stop up ahead. You will not rush to get there, but you do know you will visit it in time.
Carrie: When I started in the group I was ready, so the fear of what I would learn wasn’t paramount the willingness to share was. I’d been diagnosed and treated for four years before the group started up. Earlier I would not have been ready to listen.
You may have solid reasons or niggling fears influencing you. Phillipa’s story demonstrates how much a support group can affect your emotions.
Phillipa: When I was diagnosed with Lupus it caused a great crisis for me, internally, around the concept of wholeness and perfection. Now I had a flaw that could not be corrected. Here was something that wouldn’t go away. I didn’t realize how vain I was until I started having difficulties with my skin. [Like other invisible diseases] with Lupus many of the blemishes and problems are on the inside. The skin involvement you can’t hide because it’s out there in bright red. That was difficult. It’s still difficult.I joined a Lupus Support group within nine months of being diagnosed. They were organizing through the hospital, so someone gave me a call and told me there was a meeting being arranged. I didn’t go to the first meeting because I was scared. But I went to the second meeting. By that time I had determined I would be more scared not knowing. I guess I was ready to confront a little bit. Why was I scared? I was afraid I was going to turn into a freak. I had read a book from the library. It was a good book, factual, calming and reassuring, in the sense that I was able to recognize that the kinds of symptoms I had were not severe. But at the time the kind of remedies they had for Lupus were cortisone drugs like Prednisone, and they talked about the side effects of it and people ballooning up. So I had a vision of being surrounded by Lupus patients ballooned up and disfigured. It was scary. It would force reality on me. I would be looking at myself some point down the road and I didn’t want to contemplated a future that would include that kind of disfigurement.
When I did take the step to get into the Lupus group I felt immediate relief, much as when I read the book. I looked around, and although I could identify the people who were on Prednisone because their faces were round, there were many people there who did not have round faces. There were no freaks. One woman whom I met who was much disfigured because of Lupus rash. I surprised myself that I would go and talk to her. I wasn’t so fearful that I wouldn’t confront her. Hers was an exceptional circumstance. She was stricken suddenly and viscously and nobody knew what it was so there was no ability to be able to treat her. She was a photographer’s model so the blow to her self-esteem and lost career was tremendous. I told myself, “If she can live with it, I can live with it too.” It helped me to put it in perspective.
“Invariably, I find my fears are worse than reality.” Phillipa
Your decision to join a support group, and to stay or leave it eventually, will depend on several factors.
b) Monitor or a Blunter?
- If you are a blunter you might feel a support group forces you to dwell on what is wrong with you instead of focusing on what still works, what you can still do. You may choose to use your limited energy on the activities and people that allow you to feel positive and fully alive.
- If you are a monitor you will most probably find a support group a rich source of information, comparative experience, anecdotal evidence and a reality check that helps you put your condition in perspective. You will come away from a monthly meeting feeling positive and energized.
c) Nurturer or an enabler?
- If you are an enabler you are more likely to draw from the group what you can to strengthen yourself and move on, using what you have learned to enable other people to help themselves.
- If you are a nurturer you might welcome the nurturing “doing” support of another member. You may want someone who gives you the warm fuzzies you desire, helps with practical things like transportation, food and bathroom concerns, and never forgets to ask how you are. It is possible you will find within the group a person or persons whom you are drawn to nurture.
- Enablers are often attracted to this role, because they can see a way to use their strengths. This is not a teaching role, or a nurturing role, though a good leader provides elements of both, often by adding people with these strengths to the team. If a leader is clever enough to poll the group for their needs and encourage a system for meeting individual needs, you will be more inclined to stay within the group.
Often your decision to remain or stay is based on the quality of the product. You might appreciate the expertise of the speakers or the scope of the newsletter. You might be attracted by a professional approach (e.g. meetings start and end on time, members are encouraged not to monopolize the conversation, and communication is clear regarding upcoming events). If the meetings appear disorganized and unfocused, you are soon going to look elsewhere for support.
If you do make the decision to join a group, there are several sources to find them in your area: your doctor’s office, your library, brochures in medical clinics, the Yellow pages, internet and word of mouth. If you come from a rural area, finding a support group will be harder. You may have to ask your doctor if he will contact another of his patients with the same problem and see if he or she will phone you. From there support can seed and hopefully grow.
Phillipa: Now some of my best friends are people I met at the Lupus support groups. It is a tremendous feeling to have this family out there, who I can talk to, and who are able to relate to me in a way that other non Lupus people could not.
If you are fortunate enough to find someone with whom you are able to share at a deeper level, this person may be the magnet that keeps you coming to the group. Here is a person who understands how you feel physically, can relate to the emotional ups and downs you go through and can speak to you in a way that truly helps. No matter how much a family member loves us or wants to help, only those who have shared a common experience can give you that sense of familiarity which brings some relief.
e) The negatives
Phillipa expressed a common initial approach to the idea of gaining support through a group. Are you afraid that in the people you meet in the group you will see horrific mirrored images of yourself in the years ahead? You might have the idea the group is made up of people who sit around whining and complaining. You might envision non-stop lists of symptoms and horror stories – each member working to top the last. Like Phillipa, you won’t know until you try attending a group. It takes courage. But finding courage to do a thing most often gives us the greatest rewards.I felt much like Phillipa when I first decided to attend a meeting of the Ostomy Association. I expected to be surrounded by older people because at the age of 27, I was quite young to have Crohns and to have had so much surgery. There were a variety of people present, some in wheelchairs, the majority older than me, even some that smelled. This was my big fear. Now I had this pouch hanging on my side, it could leak or fall off exposing everyone to the strong odor of my stool. Inside this plastic pouch was a turned back piece of my intestine that would make weird noises at the most embarrassing times. As the guest speaker began to talk to us a muted chorus of gurgles, growls and raspberry noises went on around me. Although nothing embarrassing happened to me, I felt tainted just by association. I attended the group for only a year, before making the decision not to go again. I had several reasons:
- The difference in the age gap between myself and other members.
- My refusal to accept that I wouldn’t be whole and Crohns free one day. Seeing all the other people with it made that a bit of a fairy tale.
- I prefer in all things to find my own way, whether it is researching, learning a new sport, or fighting to adjust to Crohns.
- Also I am a Blunter. The most effective way I deal with my disease is to get on with my life. When I sat in that room surrounded by other people with Crohns or colitis, whose conversation revolved around symptoms, treatment, restrictions and other problems, I was constantly faced with the fact that I had Crohns disease.
- As an introvert, I found the people sucked away my limited energy. I always went away slightly depressed and feeling negative
Carrie: Some of the things I was reading weren’t pleasant and didn’t necessarily pertain to me but in your mind, you think it does. But you can’t get caught up in that because then you’re not living moment to moment you’re living ten years down the road.
Matthew: I have joined local support groups in the past but found most of the members were older than me and were dealing with Type 2 diabetes that can be regulated by diet and exercise. With a lifetime experience of Type 1 diabetes, I had little in common with these people.
Sylvia: One of the ironies of belonging to a support group is that you are there because you’re sick. The group needs money to continue to support each other’s needs. You put on some kind of money raising activity and by the time it is over everybody is sick and you end up visiting each other in the hospital. You can joke about ‘who’ became the sickest! You’re looking for spouses or doctors to lead the group because all the members are too sick to do it. It’s hard to keep the group together.
f) The plusses
In Chapter 2, Diagnosis, I list the plusses of joining a support group. You gain access to the newest information on your disease, to expert speakers in the field, to others’ experience of dealing with the disease, and to the opportunity to give back some of the wonderful support given you. Of course, if we overcome our reluctance and fears, like Phillipa, we realize our imagination has ruled, and we’ve done ourselves a disservice.
There are many benefits to joining a support group. Phillipa goes away from her meetings uplifted. Phillipa is a monitor and wants to be fully informed about the total scope of Lupus and how it affects her on a physical, mental and emotional level. Phillipa quickly became a resource to her group and with others acted as a catalyst to begin a national support group. She used the information and experience she gathered to help many others adjust to Lupus. You too may find a positive influence, good role-modeling, and a raison d’être through joining a group of like-minded individuals.
During the year I attended the Ostomy Association support group, I was asked to become a hospital visitor to people who were waiting for surgery. I remembered the wonderful young woman who had taken the time to give me hope prior to my Ileostomy surgery and I agreed to take on this work. This is one of the plusses for me. Other positives in my own experience of group support:
- I gained new information on coping with Crohns that was not available through other sources.
- I met many brave people who served as marvelous role-models to me.
- I was able to put my condition in perspective with others who were worse of and count my blessings.Here are some from other people I interviewed:
Phillipa: I became the President of our local chapter of support group and then helped build a national association in order to provide support for the local support groups. I was President of it for many years. It helped me keep my focus out there in the world. I’m the kind of person who lives a lot in the brain. Like anybody going through difficulties I had periods of feeling sorry for myself. It was always helpful to talk to somebody whose disease was causing him/her more difficulties than I had. In a sense, it trivialized the things that I saw as my problems. So many people confided their struggles and pains and fears to me; it normalized the feelings I was having. I need to either share my positive experience or get information
Matthew: I joined the Canadian Diabetes Foundation. They put out a quality magazine with interesting articles with the latest research.
Sylvia: I’ve belonged to a Lupus support group in every city I’ve lived. If there were a group in this city I’d be active in it. I go in order to share ideas that I can’t get from my medical support team, like new techniques for coping with pain. We share things that work for us and might help someone else. There is comfort in knowing you’re not alone. My mother taught me there is always somebody worse off than you. You see this and compare yourself and don’t feel so badly about where you are.
g) Contributing to your support group
If you have found satisfaction in contributing to a group, either as becoming part of the administrative team, a speaker, visitor or resource, the more power to you. Remember that life is change – even volunteer work. You need to stop and assess your contributions at intervals. There are several things you might want to consider.
- Your stress level
Each time I hung up the phone after accepting a request to visit a new patient, I began to feel stress. I handled it by pretending it wasn’t happening, which means I sublimated my sense of anxiety. My guts immediately paid for my self-deceit. When the day came to visit, my adrenaline level increased with every step I took inside the hospital. Assailed by the smells and sounds I associated with pain, suffering, embarrassment, loneliness and fear, my external stressors increased.
Then it was time to confront the patient. A person preparing for surgery often asks for a lot of details of your own experience. You have to walk into that hospital room prepared to be honest. If you fudge your answers, they read it in body language, facial expression and tonal quality. If they decide you are hiding information from them they will assume the worse and your visit will raise their anxiety level rather than reduce it. Each time I forced myself to drag up all the relevant facts of my illness it put me back centre stage in that traumatic and stressful time. I found the visits were causing me internal stress, and setting back my own journey to wholeness. After five years, I made the decision to say no to hospital visiting.
- Doing the right work
I’m an enabler, not a nurturer. The job that lights a fire in me is helping someone with an invisible disease, help himself. In a hospital setting you are often restricted by rules, policy, family members, medical staff and timelines from encouraging a person to do what will most help them to recover quickly. For instance you may thing a series of motivational tapes will nudge the patient into a more positive frame of mind, but their tape recorder isn’t approved and therefore can’t be plugged in his room.
Gradually as I became older, my lengthy stay in hospital and multi surgeries moved into my past. I recognized that there was a bigger age gap between myself and the patients I saw, and felt they would be better served by having a younger role model visit them, one whose experience of surgery and medical treatment was more recent and up-to-date. I felt I could no longer relate to the younger person effectively.
- Your conviction
Today, I enable caregivers and those with dis-ease on a one-to-one basis, and I speak to large groups of women entrepreneurs across Canada on the importance of Being Whole. This work is just as relevant as my hospital visiting. In what new direction do you want to turn?
I was the queen of PityMeCity for years. Now I am convinced “Pollyanna” modeling is as important as the actual message. Every word you speak or write can be negative and self-pitying, or positive, motivational and a source of hope. You can be a poor role model or a good one. In the long run, with the avalanche of invisible disease hitting our communities, it is the role modeling that will decide how our society deals with the growing numbers and urgency of the issues.
If you find yourself in a similar position, where the place you chose to contribute no longer feels right, don’t get caught up in guilt or the belief that you’re indispensable. Often by walking away from a position (even when there appears to be no one to take our place), we make an opportunity for another person of whom we weren’t even aware. We also free up the time we need to contribute in a new area – one that excites our creativity, passion and to which we are convicted. Gradually, I found a way to put a positive twist on the information I wanted to pass on.
Over years of dealing with Crohns, medical staff, treatments and hospitalization I became an authority on Crohns disease. I found it increasingly frustrating to hold back my views. Most often, these were contrary to the treatment being prescribed by the doctor, and opposite to the choice the patient had obviously made for herself. For example, I disagreed with the conservative, first stage treatment of cortisone drugs. In my experience, it was better to opt for surgery sooner; while you were still healthy enough to recover well. If you went through months on steroids the side-effects could cause you further health problems, weaken your immune system and make it harder for you to recover from surgery. As this was a subjective view point I managed to keep it to myself. I felt hypocritical in suppressing my conviction and concluded that if I could not support the treatment the patient had chosen I could not do my best for her.
A THRIVER’S ACTION PLAN
- Make a list of the people you want on your team and assign them roles.
- Think about the various ways you can best communicate your needs. Experiment with them and begin to use the most effective.
- Ask each of your team members to tell you what method of communication best works for them. Remember to treat them individually.
- Go to one of the meetings for a support group in your area to try it on for size.
- Is there a role you wish to play in supporting others? What is it? Implement it?
- Listen to your tone of voice when you are talking to people. Do you sound whiny, demanding, or irrational? Catch yourself before it becomes a habit.
- Always express appreciation for a Supporter’s contribution. A word of thanks goes a long way.
Now you have your support team in place, there is every reason for you to create a life in which you thrive.
1. What changes are needed at work?
a) Negotiating new terms
For months, maybe years before you are diagnosed, you may be struggling with the symptoms of the chronic disease attacking your body. Eventually this will affect your performance in the workplace. You will reach several points when you need to request changes that will help you cope.
After many painful lessons in the school of hard knocks I have concluded I can only work a few eight hour days in a row before I am drawing on my reserve energy and getting in trouble. I had to accept that I could only work part time in order to create the optimum lifestyle for staying healthy.
- Sick leave
Suddenly you might be missing work repetitively, or in a pattern (i.e. by Thursday you are so tired you take Friday off). At first taking sick days will be acceptable to you and your employer. After all that’s what they’re for. But as the number of days and number of times you are off work increase it causes problems for your employer and adds to your stressors. Firstly, if you are conscientious you feel badly about taking so much time away from work. Secondly, there is even more pressures at work as you try to catch up after days away. It is not a situation that can continue long term. This is when it is necessary to negotiate with your employer. You might ask to work part time or request a lateral move to a less stressful position. You may ask to job share with someone else, or decide to take a reduction in pay and do a less tiring job. You might ask for time off to recoup your energy, or arrange to work at home and save yourself the time and energy used up commuting to work. To make the best choice for you, monitor the situation over several months. Recognize patterns of behavior, factor in busy times at work and take into account whether your condition is improving or becoming worse.
After two years away from her law practice in Boston, Kathy Rabin attempted to gain her career back. This is what she wrote.
“I tried to go back to work out of my home doing legal research and writing. My hope was that I could gradually increase my work activity and get off disability. I was not successful. I found once again that working compromised my health and my quality of life.
Because of work deadlines, I was no longer able to listen to my body when it told me to rest. I had made professional commitments and had to meet them despite how I was feeling. I had to quit my physical therapy program because it left me too tired to work. Also, I became very isolated. Whenever I felt well, I stayed in to work and, when sick, I stayed in bed. My condition deteriorated. I experienced relapses of up to several months after completing big projects during which I was bedridden or housebound.”
- Job hours
You will also need to negotiate time off for appointments, treatments and tests. It is important that you factor in travel time and build in a cushion of waiting time when you take your request to your employer.
You might wish to negotiate new job hours. You could suggest coming in later in the morning and staying later at night because you are not able to fall asleep until dawn. You could ask for fewer hours in your workday, accepting a cut in pay for lost time. You can negotiate the number of days a week you work or the number of hours per week, to take some pressure off of yourself.
If you are self-employed then you are probably going to have a lot harder time of it. A large percentage of the invisibly ill are entrepreneurs. You’re the worse boss you can have, because your business has and probably still is taking precedence over your health. When it comes to negotiating for time off or a lighter load, have the same compassion for yourself as you would show to an employee.
Shelly: I book [make an appointment with a client] a reason to get me up in the morning – so I’ll have a lot more early morning meetings and phone calls when SAD is worse –so that I’m forced to get going and that takes me on into the day. You can tell how bad SAD is by my kilo readings. When it’s bad I try to do my work by phone and minimize my driving. I’ll limit the number of cold calls I make because I know I’ll do a poor job of selling.
Your chronic condition will start to affect your performance and the standard of your work will drop over time. Even the most determined perfectionists can’t stand forever against sleep deprivation, anxiety, depression, pain, loss of focus, concentration and short term memory. When you realize your work is deteriorating, it is up to you to bring it to the attention of your employer and negotiate support. Certain tasks may be handed over to someone else short term, or you could request that someone check your work before it goes out. Your employer might decide your work is not up to the standard necessary and assign it to other employers. You must be willing to accept this present situation and work to make it as temporary as possible. There are new tricks you can use to keep your performance level up.
- Travel time
Shelly: I limit the driving because I know it will cause me more stress. I limit face to face encounters because they cause more stress.
You may be able to limit your travel time by working out of your home, or make it work time by changing the way you travel (e.g. carpool or transit so you don’t have to drive yourself).
- Reducing stress
At the end of the day, Shelly makes a point of scheduling quiet time to alleviate the buildup of stress in her mind. Melanie, who had many irons in the fire when it came to working, began to eliminate her jobs one at a time until she reached a level she could handle. I’m generally careful to set realistic deadlines for my writing (I missed by a long shot on this book) but I’m using what I learned in “not sweating it” over the years to take the pressure off myself and set a deadline I can meet.
Henry: Another trigger is when I have a whole bunch of jobs to do and I wake up tense thinking I have to do this and this and this. I’ve had to train myself to say I only need to do this or this, and the other things can wait.
b) Getting a job
Matthew: I sometimes wonder if my diabetes hasn’t kept me from getting jobs. I always am truthful on the application, and then the guy may look at it and say, “I don’t want to have to handle the situation if he goes into shock or a coma.”
In 1990 the Americans Disability Act was passed requiring employers to make adjustments and accommodations for people with disabilities and chronic conditions. As of July 1994 in the States, companies with 15 or more employers are required to follow the ADA guidelines in implementing necessary changes to accommodate these workers.” Although smaller companies are not forced to follow the guideline, many of them embrace the opportunity to enable their employees with disabilities to continue to work. In Canada these laws come under Federal Jurisdiction and comply with rulings set out in the Canada Labour Code.
Ergonomics is the science of customizing a workstation to the needs of the worker to provide the maximum degree of comfort, efficiency and safety. If you are presently working at a counter too high, sitting in a chair that angles uncomfortably or being forced to use a keyboard at the wrong height for your body, you are experiencing greater physical stress than necessary. It is in your own best interest to discuss ergonomics with your employer and co-workers and have your work area customized.
Presently, one of the key issues medical specialist and scientists are examining is the effect of long term sitting on workers. Several new studies show higher risks of heart disease and cancer in people who sit for extensive hours a day – such as writers. Should I be afraid? No. Moderation in all things drives my timelines. If I sit long hours, I find ways to break up the time, stretch, take rests and exercise.
d) Repetitive Strain Injuries
This type of injury is a common side effect of much of your work, as many of the tasks you do are repetitive. There are great books out there to help you assess your situations and apply common sense solutions to eliminate strain caused by work. There is also a wide range of inventions to assist you in reducing the strain you experience. Find out from your doctor what will aid you and implement.
2. How do you change what and how you eat for the better?
a) Changes in eating habits
- Eating for health
Your doctor is almost certainly going to recommend that you change your eating habits in some way. He might ask you to cut out chocolate, caffeine and acidic foods to eliminate some of the inflammation of arthritis, Lupus, Crohns and fibromyalgia. You might be told to go on a low fat diet to lower your cholesterol levels if you have heart disease. People with diabetes are asked to reduce their intake of carbohydrates and those with bowel diseases milk products, whole grains and spicy foods. Almost everybody is told to lay off alcohol – except for those with heart diseases. Studies continue to show that one glass of red wine a day is beneficial in lowering cholesterol level and removing plaque from the arteries.Changing your diet appears to be a great hardship at first. Some of you are being asked to give up your comfort foods, or the alcohol and caffeine you use to deal with stress. But do investigate this area for yourself. There are many good books out there. I highly recommend Foods That Fight Pain by Dr. Neal Barnard. It is a book that appeals to our common sense while at the same time giving great hope. It shows the dramatic differences that a change in diet can make to our health. For example Dr. Barnard describes work done by Dr. Dean Ornish in proving that heart disease can be reversed through diet. One group of patients with heart disease was placed on a typical low fat diet that any doctor would prescribe a heart patient. They were to choose skinless chicken and fish over red meat, quit smoking and try to stay active. The second group was asked to follow a vegetarian diet (eliminating all meat, fowl, fish). They were to quit smoking and exercise thirty minutes a day or one hour three times a week and do some type of daily stress management exercise like meditation, yoga etc. A year later each patient had an angiogram that was compared to his or her initial angiogram. In the case of those on the regular heart diet there was no change in arterial blockages, in fact some had grown. In the case of the second study group, the vegetarians had an 82% improvement rate. “They were actually starting to clean themselves out. This wonderful result was achieved without medication or surgery. Their blockages shrank simply by using vegetarian foods with mild regular exercise, stress management and no smoking. Their chest pain went away before the year was up, within weeks of starting in fact.” Barnard concludes. They also lost an average of twenty pounds each and felt more energetic than they had in years.
Barnard points out that both groups grumbled about the changes in their diets, but the vegetarian group learned to love theirs, while the heart diet group became more bored with theirs. And everybody grumbles about change initially. If you elect to have surgery or go on a cortisone drug rather than try dietary change your doctor will still ask you to change your eating habits in some way. Let us be clear. I am not advocating you try a vegetarian diet without going to your doctor. However, this is an excellent way to work at self-healing while waiting for diagnosis. Who knows by the time you receive your tests results you may have already minimized the problem just by changing the way you eat.
- Eliminate Free Radicals
Free radicals are found in even healthy bodies. They are necessary for such jobs as toning our muscle mass. However, the concern is not to let an excessive amount of Free radicals loose in your body, because they do considerable harm. Free radicals are actually unpaired electrons that are looking for a partner. In their search, they bump into paired cells, damaging them. If you saw a slide of your blood magnified and you had Free radicals running freely through it, you would see that your red and white blood cells are actually misshapen from being in collision with the Free radical. Damaged cells are not able to do their job at 100% and so your body’s ability to heal itself is handicapped by an excess of Free Radicals. The more unpaired electrons there are, looking for a mate, the more damage is done. It is in your best interest to eliminate as many sources of Free Radicals from your lifestyle as you can.
The Enemy –Sources of Free Radicals
Carcinogens Pollution Smoking
Alcohol Lack of exercise Viruses, infections
Allergies Foods (preservatives) Stress
- Add antioxidants
Antioxidants are your body’s allies. They enter the body through food sources are processed and move through the blood stream, where they locate the Free Radicals, and wrap around them so that they cannot continue to harm other cells. Bound by the antioxidants the Free Radicals are then removed through your lymphatic system (the body’s waste disposal system).
Antioxidants are found in the following:
The Allies – Sources of Antioxidants
Vitamin C Vitamin E + Selenium Beta-Carotene
Evening Primrose oil “Green” foods Garlic
Grapeseed Extract Vitamin A Zinc
“But where do I find all these sources?” you ask, possibly envisioning, like myself, yet more pills to take, more expenses. All of them are found in the foods you eat, if you make the right choices. Following is a list of foods that will provide antioxidants to your body as well as some suggestions of other diet changes you should make in order to eliminate an excess of Free Radicals.
REQUIRED DIET CHANGES
Red/orange fruits and veggies alcohol
Green cruciferous veggies caffeine
green tea red meat
essential fatty acids: flaxseed minimize poultry and fish
Alpha-linoleic minimize dairy products
Beans, nuts, legumes minimize processed, starchy food
Organic whole grains
lots of PURE WATER
- Naturopathic remedies
Echinacea is also a great booster for the auto immune system. Along with many other alternative medicines is a natural way to treat your body. Visit a store specializing in herbal remedies and read the literature available. Many stores provide a book that lists symptoms so that by looking for yours, you can see the natural remedies recommended in treating them. Be cautious, and let your medical doctor know what you are taking. Even though these products are natural, they are derived from the same plants as most other drugs. You can suffer an overdose if you and your doctor are not fully informed.
3. How do you eat?
a) Experiment with food combinations
Many people suffering from bowel diseases have asked me what things are restricted from my diet. They name a long list of things they can no longer “stomach”. What I discovered is that it isn’t the foods that hurt me, so much as it is the way I eat them. For instance, I can’t drink a glass of juice in the morning without getting a bad bellyache. But I can drink the same juice later in the afternoon, along with some type of food. The same thing might happen to me with fruit, if I take it on an empty stomach, or eat it alone. But mixed with other foods the fruit doesn’t cause me pain. I find that I can’t eat all of one thing on my plate at once, without tempting a blockage, for instance all my vegetables or all my meat. Instead, I eat the foods alternately so that it is passing through my system in layers. You might find that you can’t tolerate cold cereal in the morning and need warm soup or porridge instead, or that you have to eat a carbohydrate along with your salad greens. Eating a salad before your main course is much harder on your digestive system. You should move your salad to the end of the meal. Experimentation is the only way to find out what works best for you … Different strokes. Don’t take what is written in a book as gospel. There might be many case studies to back up that people with Crohns should not eat refined flours and sugars (nobody should actually), but they are not something that exacerbate my Crohns, while some of the high fibre grains do. Only you can come up with the best combination for you. Sorry. You’ll have to use trial and error and probably pay a few times before you get it right.
b) Eat smaller meals
You will find if you are smart enough to cut back on your meals, that you are not going hungry. Our bodies work more efficiently on much less food than the average North American ingests in a day. In fact, the number of people who have reached obesity levels has doubled since 1980. Now one out of every four Canadians, and one out of every three American’s is labelled obese according to the medical standards of weight. If you are one of the 70% overweight or obese in North America, your excess fat may be a factor in succumbing to chronic disease. Replacing fat with muscle will help you use your food more efficiently and increase your sense of wellbeing. Eating smaller meals more often is a good start.
One of the mistakes you might make is to continue to eat the three squares a day that our parents taught us. Your sick body has been telling you for some time that this isn’t working – whatever chronic disease you have. I discovered, over much too much time, that by eating smaller helpings I was taking the strain off my digestive system and allowing it to rest. When we eat large meals, our body has to use up its resources focusing on digestion, so that it has fewer left to fight the disease. When the body is busy digesting a large dinner it is not able to get the necessary deep and relaxing sleep it needs to heal itself.
c) When to eat
With close monitoring you know what foods affect you in what ways, but have you learned how long it takes you to digest certain foods, how much gas they produce, how often you need to go to the bathroom? If you are continuing to work in a public setting, travel extensively or live with others, you will begin to make choices around when you eat. For example you may not eat for several hours before taking a flight or during the flight. You may insist on eating shortly after your flight lands. Or you might not eat after 8:00 p.m. because you know you will not sleep as well. You may choose not to eat gassy foods like broccoli, cauliflower and cabbage if you are in a group and know you will be there for several hours after eating. You might find that you like to be up several hours before eating breakfast, or that you wake starving and feel much better if you eat immediately. As you get to know your body’s needs and what maximizes your sense of well-being you become more independent of other people’s choices. It is important that you meet your own health needs, not wait to eat with a spouse who arrives home late from work every night, or go without a meal because a meeting is scheduled for that time.
4. How does exercise affect your wellbeing?
Exercise is one of the first things you drop, if you ever did any in the first place, when you are feeling unwell. This is the worse choice you can make. Your caregivers will emphasize the importance of movement to improving your condition. Even when I was at my lowest weight and weakness and couldn’t move I had a physiotherapist thumping on my chest to keep my lungs from filling with liquid.
Exercise is important for many reasons. If you want to be healthy you better include it in your lifestyle. If you want to stay healthy you better not slack off, and if you are suffering a chronic condition you better find a new way to fit exercise into your life. Why?
a) Exercise stimulates your metabolism
This especially affects the digestive process by increasing the efficiency of the absorption of nutrients and the elimination of toxins. Here come your antioxidants, there go your Free radicals. Already your immune system is getting a boost. Focus on aerobic exercise even if it is just walking fast while swinging arms out, around and above head.
b) Exercise increases flexibility
A constant source of pain to many is stiff joints caused by inflammation, but also lack of use. When something hurts we tend to leave it alone. Up to a certain point, this is good. The pain is your body signalling a part of you is hurt and to give it some attention. That means don’t ignore it, use some short term remedies like heat or cold to treat it, but don’t wrap it in cotton wool and tuck it away. By refusing to use stiff joints we are exacerbating the problem. Our muscles contract and cause even more pain over time. If you follow a daily routine of stretching exercises you can do a lot to alleviate the stiffness and the pain. Depending on your condition, stretches can be gentle to more rigorous. Once I began to recover, I started yoga. You work at your own pace. It is an excellent way to increase flexibility.
c) Exercise increases circulation
What better way to help heal your body than to get the blood flowing through it at a greater rate? You can provide a higher number of red cells to help fight your disease. Increased circulation also stimulates the growth of new cells to take the place of those that have died fighting the disease
d) Exercise strengthens your body
If you have suffered a condition that has kept you immobile for even a few days, there is a noticeable difference in the amount of strength you can bring to even a simple task like feeding yourself. By following a regime of simple, repetitive movements every day you can rebuild your strength. Yoga is also a great way to rebuild your deteriorated muscles. One of the muscles of the body that can be weakened by hypertension and heart disease is the heart. I haven’t met a doctor yet who hasn’t urged a heart patient to follow a program of re-building the strength of the heart through slowly increasing the distance of a daily walk. Often heart support groups have a walking or running program that provides the aerobic exercise necessary to make that all important muscle strong again.
e) Exercise increases your energy level
Increasing the flow of blood through your arteries and veins also increases the amount of oxygen the cells of the body are receiving. In no time you will feel an upswing in your energy level. You may even become addicted to your daily exercise because you feel much better after doing it.
f) Exercise increases your sense of wellbeing
Oxygen isn’t the only thing you’re getting as you swing down the road with a song on your lips. Your body is also being given the signal to send serotonin through your system. Serotonin is the chemical that makes you feel happy, great, super great. And exercise is one of the things that sends it rushing to your brains where you get your happy fix.
“Regular physical exercise has obvious physiological benefits. But it also has enormous benefits in psychological health; lessening of anxiety and tension, relief from depression, increase in self-esteem, buffer against stress, feelings of greater vitality, and improvement in intellectual functioning. With a program of regular exercise, you feel better, look better and do better! Those who think they have not time for bodily exercise will sooner or later have to find time for illness.” Edward Stanley, 15th Earl of Derby
5. How will having a chronic disease affect your social life?
Your social life will be affected and might never be the same again. After all, you’re not the same person as you were before the disease.
a) Changing Activities
Henry: When I’m run down I am more susceptible to Crohns. I used to be able to leave right after work Friday, drive most of the night, sleep two or three hours get up rock climb and drive back for work on Monday. I’m missing a lot of climbs now because I can’t do that anymore. I have to drive ahead a day, get a good night’s sleep and make sure I quit in time to get home for a good sleep before work. It separates me from some of the club members.
Henry changed the way he does this activity. He adjusted to meet his body’s needs without giving up something he loves. Often it is the things you love the most that are sacrificed first. You might stop bicycling or playing basketball in order to rest more. You may give up theatre or your bridge night so you can manage your domestic chores. Use some common sense here. If you are making choices around what to do with the little energy and endurance you can garner, pick the things that will further stimulate you and provide a positive outlet. Pay someone to do the domestics or get Home Care to come in. Use your limited energy to play Bridge or basketball. Either activity will increase the levels of serotonin and melatonin in your system. This will boost your appetite, your immune system and your will to get better.
However, be realistic, you may find yourself, like Henry, frustrated by your body’s refusal to cooperate with your choice to continue a favorite activity.
Henry: I go and climb and build up the necessary muscles to climb, then with the lost weight I lose muscle and can’t do the climbing. It’s a cycle. You’re too tired to go and exercise so you lose muscle, but I think my body is also using up the muscle tissue somehow.
Matthew: I’m very frustrated now. I love to run. It’s my exercise of choice. It’s the way I maintain my weight – better than any other type [of exercise]. But because of the problems with my shins, I can’t. I try riding my bike, lifting weights and massaging myself, but I have gained weight. I am at the heaviest I’ve ever been.
Both Matthew and Henry are seeing their bodies change because they are no longer able to do the activities they love that build strength and endurance. When my back injury kept me from exercising for so long I gained considerable weight and lost the majority of my upper body strength. I’m working to rebuild it, but like Henry and Matthew I have to face the reality of my condition and realize that fibromyalgia affecting my rotor cuffs will prevent me from doing the necessary exercises. So you slide forward, and slip back, but the important thing is you don’t give up.
When you just can’t do the activity you love put it behind you without regret. Feed yourself positive messages like, “It will be waiting when I’m ready.”, “This is just for the short term.” Focus on a new interest that will also stimulate you.
b) Changing friendships
Gail: I haven’t had a boyfriend since I found out I had Crohns. I don’t know if it’s my doing, my thinking about the disease or my personality. I’m shy and probably put my perception of myself onto them.
Did you drive them away, or did they just not care enough to hang in with you? Probably it’s a combination of both. When you aren’t feeling well you probably don’t want people around you, and don’t have the energy to meet their needs. You could also be a bore, constantly focused on your health, or a bear because your exhausted and in pain. Fair-weather friends will disappear.
You will make a conscious decision to drop some friends because they disappoint you. They may be nosy, insensitive, gossipy or tiring. Remember you are trying to remove the stressors in your life. Some people, whom you never saw as friends before, will become your friends because they bring you the things you do need like practical assistance, a listening ear, empathy, compassion, humor and kindness. Possibly, you connect because you discover you can support each other through a shared experience of the same disease. I found that dealing with my Crohns and hospitalization made me more sensitive and compassionate, so I saw people from a new angle and allowed people into my life that I would not have in the past.True friends will go through hell with you and often do. They feel your pain, your loss. They are as frustrated as you because they can’t make you better. They too go through the stages of grief in facing the loss of a friend, or the loss of the person you were before the disease. They too have to accept and adjust in order to grow along with you.
c) Changing how you contribute
As humans, we know that we benefit by giving to others. Many of you will have donated hours of your time to community events, your children’s interests or have been a productive part of a team at work. Now you have to bow out. Along with the feelings of guilt that you have to say no, that you’re not pulling your weight, that you’re letting them down, comes the loss of affirmation and good will giving generously has provided you in the past. Here is the proverbial closing of one door while another opens. Think of new ways you can contribute.
Sylvia: I call myself a professional volunteer. I loved my work in the community. When I got Lupus I had to start saying, “no” to volunteer positions I would have grabbed at before. When I’m not involved I feel lonely and left out. Now I qualify that I will do what I can for as long as I can. I take on tasks that can be done at home in the middle of the night when I can’t sleep. I still find ways to give, but they’re simpler and can be fit into my allowances of time, place and energy. Now I bake cookies and take them to my doctors, nurses and pharmacist. They love it when they see me walk into the clinic with a batch
6. How does having a chronic disease affect your financial life?
a) Changes in earning ability
- Financial status
Don’t despair. Often if you are forced to take time off, or you lose your job because of bad health, another door opens down the road. Although I was a stay at home mom, and my husband’s job financed us, the years I was most sick cost us a great deal more. I felt that I was dragging my poor husband into financial hell. Then, as I began to recover, my parish rector suggested I take on the part time job as parish secretary. I agreed and found myself earning a small income at the same time as I re-built lost skills and learned new ones. My income continued to increase over the next years.
You may be forced to become financially dependent on your workplace compensation, disability insurance or a spouse or child. It can be a frightening and humiliating time – especially for older men with paradigms that their worth is measured by how well they support their family.
Long term health problems will cause loss of income. You may be the major breadwinner in your family and now have to watch as your spouse takes on extra work to cover costs. You may lose a high-income salary through loss of job or forced retirement and see your lifestyle deteriorate. You may see your income decrease as you are limited by your health to part-time work.
Adam: When I was diagnosed with ischemic heart disease, I lost my medical as a commercial pilot and Air Traffic Controller, so I took a position as Training Supervisor in ATC and discovered strong administrative and teaching skills I never knew I had. I’m really enjoying this new work.
- New options
“I have taken up some new work in ministry
and know I feel better when I look beyond myself.” Daniel
Just the opposite can also occur. Daniel had retired as the Rector of a large Ontario parish and settled into what he thought would be a stress free lifestyle. Then he had a stroke. It forced him to make many lifestyle changes. He chose to quit smoking and drinking alcohol. He also made the choice to go back to work.
Ned: My heart attack forced a whole lifestyle change on me. I retired from my job and built a home in a small rural community. I walk several miles a day, enjoying nature and silence, something I never took time to do before the attack. Many of my neighbors ask if I will do building and gardening jobs they don’t know how to do, or don’t have the time to do. I love to work with my hands. This allows me to go at my own pace and enjoy the work instead of feeling pressured by it. Now I’m earning money doing something I love.
Often a major health problem is the only way your body can get you to hear it screaming “quit”. Have you had tunnel vision for years and been hanging on to a job you knew was too stressful, that gave you no joy, that didn’t meet any of your needs – except financial ones? Now is your chance to turn in a new direction. With recovery or maintenance, you are able to inch your way into work you truly want to do.
b) Changes in Spending
- New choices
With the increase in drugs and treatments for your disease, there is more pressure on the family income and choices have to be made against what isn’t bought so you can pay for your medications. It might be that new bike your son wanted. Instead of sinking under a mountain of guilt and self-flagellation, call a family meeting. Discuss finances and include your child in brainstorming ways you can meet the family’s needs. The gift of inclusion, respect and love you bring your child will be far more valuable than a bike. Who knows, you might decide to sell your golf clubs – you haven’t used them in years – to buy a second hand bike.
- Spending savings
The solution is in your hands. You must accept that your income is changing and pare down your lifestyle to match. There can be many plusses in simplifying your life. With less material property you have lower expenses, less maintenance and servicing, less care, lower insurance costs, less room needed for storage and a lot more freedom. Try disposing of the extra car, credit cards and the clothes, toys and furniture you haven’t used for years. You will feel so much lighter. You will be more aware of what is truly important. There are a lot of plusses in having changes forced on you by chronic conditions. This is one of them.
You see your financial security being eroded as you make inroads into your savings to make-up for lost income and added expenses. This is a frightening time for someone who has a poverty mentality. You believe that there will never be enough. Yet, those savings are already there, in place, to cover these unexpected costs. Isn’t there enough already? If you have faith, you will be more able to recognize the abundance in your life by using more efficiently what you have, recognizing new sources and being open to the gifts of others. A strong person will allow others the opportunity to give and feel good about it, instead of letting pride get in the way.
7. How does having a chronic disease affect your personal life?
a) Changes in intimacy
By intimacy, I am talking about the special closeness between spouses or partners, both physical and emotional. Often the need for change is harder on your partner than on you. You’re probably feeling so unwell you’re not interested anyway. However, there is generally a backlash of guilt, sorrow or anger around your disinclination to perform. You may feel you are letting your partner down right when he or she is being extra supportive. Some of the people I interviewed shared that they got angry when their partners pressured them for sex, when it was obvious they felt unwell. Or they feel pressured by a partner who wants to know every thought in their head and each feeling as they experience it. Some partners are concerned about hurting you with their lovemaking and so back off. You may accept this consideration with relief; but if communication is poor, you might feel you are now repugnant to your partner, or he or she doesn’t really care.After all my surgeries I felt very self-conscious about my body. When we resumed our sex life, I made it very difficult for my husband, as I brought my low self-esteem to bed and read into every one of his words and actions or lack thereof some kind of indication that I was no longer desirable. If you are trying to be intimate when you are hurting, you might utter a continuous stream of “Ouch, not there, don’t touch that, no, and can you just wait for a minute?” that will frustrate your partner (unless this sounds like your normal sex talk). After several sessions of too much negativity, direction and concern for inflicting pain or causing harm, you will pretty much have your partner brain washed not to come near you again. Of course, this is not what you want. So, be careful how you dialogue and keep the communication lines open. It might be a good idea to discuss your concerns and how to protect body parts during a pre-sex discussion, so your partner is better prepared and you avoid sounding like a drill sergeant when you assume the position. If a partner gets too frustrated, angry, hurt, confused or turned-off by your new approach to sex, he or she might begin to withdraw intimacy of any kind. You may feel like you are being punished for something that isn’t your fault. You long for the touches, hugs, kisses and tussles that were a normal part of your relationship. The loss of them makes you feel even more alone and drops your self-esteem another notch. Again clear communication of your needs and desire to meet your mate’s is necessary at this point.
“I’m not able to be as close and intimate
with my husband and meet his needs.” Sylvia
Adam: Before her surgeries, my wife was raunchy and ready to try new things. When she recovered, she was conservative in her lovemaking, because she was embarrassed about her scars and pouch. It made me frustrated and angry because there was after that a bond that had been broken between us, a chasm that could never be crossed. The intimacy has never been restored in the same joyful, relaxed way it was before.
Like Adam’s wife, I had all sorts of concerns around body image and low self-esteem. I wish I’d been able to talk to the people who shared their thoughts in this book years later. If my husband could have communicated that it was not how I looked that kept him interested, but the enthusiasm I brought to our lovemaking, I believe I would have been able to put my false impression of how big a part looks played in our sex life aside and given him what he desired. I urge you not to let embarrassment or timidity keep you from discussing this subject thoroughly with your spouse or partner, before you get into bed together, so you are both clear about what really matters. When you are coping well with your disease you desire intimacy with your spouse or partner. Face it, all any of us, healthy or ill want is to know we are loved.
b) Changing your role in the home
Henry: When I come home from work, or we are expecting friends and there is a mess everywhere it drives me crazy. Martha is working too, so it is incumbent on me to do my share. I do more because it matters to me. I try not to get upset, but I have to clean it up. I get angry when I see a huge mess of things thrown around that should have been picked up. It triggers my Crohns.
It is obvious that if Henry is going to keep his Crohns under control he and Martha are going to have to make a compromise about their roles in the home. Henry may shift his perfectionist tendencies into low gear and Martha might try harder to pick up after herself. Both will have to set rules and consequences and follow through in getting their sons to clean up after themselves. With less mess and lowered expectations, Henry will find coming home less of a stressor.
You can make your condition worse by worrying about letting down your spouse or family with regards to your role in the house. Again, the best coping skill is to accept and adjust. I couldn’t carry my share of the responsibility for our home and family for many years. We had to say no to some things because of the expense of my medical bills. I could not play an active part in raising our children during their years from 6-12. I needed a housekeeper because I was too weak to clean my house. My husband and kids had to take over some of the meal preparation.
“Know what you can’t do and what you can do and work
in between them somewhere. It changes daily.” Robert
Your family’s priority is your well-being, so let your high standards slide in order to give them the gift of a healthier you. Most often you’re a temporary slouch and can resume your responsibilities later, or break the tasks into smaller pieces so you can do them over time.
8. How does having a chronic disease affect your plans to travel?
Matthew: I had to eliminate camping from my life, because I had to carry too much medication and more food. It made it difficult. I love to travel and have been planning to do more, but it is a big hassle with diabetes. It’s difficult to access out of country doctors who know enough to treat you properly. I always take notes from my doctor with me. They also have to give me notes to get syringes if I run out. If I run out of my drugs while travelling, I have to go without. In many countries, you just can’t access these drugs so you better not run out. Sometimes I’ve had to have them courier it to me, which is expensive. When I travel, I have to have all my drugs with me and prescription for my syringes. Often I need to have papers proving I have diabetes, so they don’t see my syringes and think I am doing drugs.
a) Packing light
I have to have supplies with me everywhere I go, which means I have to carry a purse, attaché or backpack. It’s a little thing compared to being dependant on a wheelchair for mobilization, but always having a hand and part of your mind taken up with the necessity of lugging medicines and supplies around also causes some physical limitation. The freedom to move freely and quickly from one location to another, one activity to another is now gone. If the seal on my pouch starts to leak, it is time consuming to get my unique supplies in another city, difficult in a small town and impossible in some countries. When you travel take drugs with you that you’re not necessarily on at that time, but that you might need if you have a crisis.
“I work hard at not letting my chronic condition affect my lifestyle.” Jocelyn
When you are already suffering low energy levels and possibly pain from your chronic disease, having to worry about the details of paperwork and packing for your medication and supplies is almost enough to put you off taking the trip. Don’t let it. With enough experience, this will become as easy as getting on the right train in a foreign country. Travel lifts you beyond your body’s weaknesses and stimulates your mind.
b) Traveling alone
There’s a scary thought, particularly if you’ve just spent weeks in hospital and are weakened by your disease. Now you may have to go back to traveling for work or personal reasons. This might be the only way you get to see your new granddaughter. Remember that your confidence level is going to need bolstering. You need some positive self-talk. “I can do this, I did it before.” “It’s only a short trip and then the family will be there to help.” You also need a practical plan. There are several things you can do to make it easier. Eliminate driving yourself to the airport if you are flying. You don’t need the hassle. Ask a friend or hire a taxi, knowing you’ll be dropped off as near to the ticket counter as possible. Take only a lightweight bag, holding your essentials on the plane, bus, ferry. Check all the rest of your luggage, even if it is more time consuming. You don’t want to have to carry it while you wait and walk long distances to gates in busy airports, shipping or bus terminals. Again don’t stint on cost if getting a limousine will be faster, safer and cleaner than a taxi. Don’t be reluctant to accept help from a friend or family member who offers to pick you up. Take advantage of moving walkways, escalators and elevators. You can push yourself harder on familiar ground after a good rest – travelling is not the time to test your endurance.
c) Traveling with others
Travel will never be as straightforward again. There are considerations of disabilities, energy levels, food constraints, bathroom accessibility. A person without chronic disease has no idea of the amount of time and energy you put into meeting these needs. Because of them, traveling with others becomes even harder. It means there are more people to consider and more people affected by your needs.
Carrie: I still love to go on holidays. We love to travel with my parents. But sometimes I feel it is a big ordeal and that I am putting them out. I know it is in my head, not the way they think. I have to work to get it out of my head. Because of the weakness in my legs I spend most of my time by the pool.
Already concerned because health has placed a greater burden on your spouse, partner and children, you do not want to eliminate the joys of travel from all their lives. When I was hospitalized, or just too sick to go on our annual ski trip, I urged my husband to take our two children and have the experience without me. They did go, but all of them said it did affect their enjoyment, knowing I was not with them or having fun. This situation forces you to find a balance between taking responsibility for your spouse’s pleasure in travel and pushing yourself to go, or staying home to preserve your health while knowing you are disappointing your family.
Jocelyn: Would I let the fibromyalgia stop me from traveling? No.If we didn’t go it would impact on my spouse. But the bottom line is it is easier not to have to do anything, it’s easier not to go. My attitude would stop me from going, or make me not want to go before the physical part of the disease did.
- Take a hard look at how your illness is affecting your work and vice versa. Then come up with a plan that is a compromise between harming yourself irrevocably, and not losing your job.
- Call a family counsel to discuss the changes in your financial status and brainstorm ways you can: a) stretch your dollars b) eliminate costs
- Discuss with your partner and children new ways you can socialize and new activities you can take up. Get started doing it.
- Make a list of all of your prescriptions and over the counter drugs. Check it against the country you will be entering, to see which drugs you can access in that country.
- Find a pill divider that allows you to ration out your daily pills and have them with you at all times, when in your own country.
- When travelling outside your country, ask your pharmacist for a printed list of your medications, and be sure each is bottled separately and clearly labelled.
- Begin to plan your next trip now. If you are incapacitated at the moment, believe it won’t last. Probably imaging yourself on this trip will feed positive messages of healing to your body.
Now that you have accepted your lifestyle is going to change along with you, let us look at who is available to support you through these changes.
 The Fibromyalgia Help Book; Jenny Fransen and I. Jon Russell; Smith House Press; 1996